I am a hopeless optimist…but, that does not mean that I never feel hopeless.
Having two sons that were born with a developmental disability called fragile X syndrome can certainly lend itself to moments of hopelessness. (for more information on fragile X syndrome, please visit www.fragilex.org) It took my husband and me many years of learning, patience and trials to come up with ways to cope and to survive some of the challenges that lay before us. Seven months ago, I published a book entitled “Becoming Mrs. Rogers”, giving vivid details on the methods and strategies we have used successfully for many years. This does not mean that our world is perfect.
In the early years, I found it easy to remain lonely behind the four walls of my home, surrounded by only the reality of occurrences that I was too embarrassed to share. What I later learned was that I was only lonely until I had the courage to talk about situations that were happening, only to learn that others had experienced them too. There was an entire population of people in the world that had things happen just like me! To this day, it is still hard to muster the courage to share these sometimes difficult situations, but it is my hope that if I do, it will allow someone else to feel hope instead of hopeless. This story is one of those.
God only knows what all special needs parents really go through on a daily basis. None of it is something that anyone would ever wish for, but it is often a grim reality.
We had our rare date night all planned out. It wasn’t scheduled to be anything fancy; just a light dinner and a movie on a Friday night. We almost never go to movies because we don’t think there is one that is worth the roughly $60 it costs for the show and sitter, so we wait for them to come out on DVD. All of our usual caregivers were busy, so we asked our long-time friend, Julie. The boys had not seen Julie in quite a while, but we thought it would be fine since they knew her. We should have taken a clue and seen the signs of anxiety ahead of time, but as fate would have it, we were in a period of complacency. See, I think this is when fate sees its opportunity to shake you to the core and wake you up!
Our normal routine on any Friday night is to order take-out from Chili’s and, as our son, Jake would say, get a “bag”. We set up the TV trays downstairs in front of the big screen and watch a movie while we enjoy our dinner from a “bag”. Because this is always the routine, and we have built this structure, we decided to keep with this routine. I mean, why would you build a grand, awesome structure and not maintain it, right? Before Julie got to our house, we had it all set up, picked up and ready.
On that same Friday morning, Jake happened to be off work because his Mentor was on vacation. We were happy to see her enjoy her life, but that left Jake with Mom and Dad all day, which in his mind, is boring. At the age of 24, he loved to work. He would rather work than run errands with Mom and Dad. We visited the grocery store to pick up a few essentials and then headed to lunch. We picked a spot where Jake could enjoy his favorite tacos, so we ordered him 3. He only ate 2 and said he was done, which was a very rare occurrence. In hindsight, I should have seen the signs at that moment, but I guess my mind was on a break. During lunch, he continued to perseverate on the words, “Kids”, “Kids”, demonstrating his lack of knowing what was next—a clear sign of anxiety due to a break in his routine. I responded with a standard, “No kids today”. I should have seen right then and there that he was asking me what was next and what was going to happen later! He wanted to know! He didn’t know. His schedule had been disrupted already and we were about to add to it with no clear guidance.
That afternoon, we told him that Julie would be coming over, and asked him if this was ok. He responded, “Yes”. During the course of the rest of the afternoon, he continued to quiz us on the schedule, and we repeated that Julie was coming later. We reassured him that we would get a “bag” and that a movie was selected—his favorite, “Toy Story”, to emphasize the usual routine with only a change in person. He would pander off with momentary satisfaction, only to return to us a few minutes later. For years I made it the routine to prepare a clear and specific visual schedule laying out each step of the day, using even more care when the routine was going to change. I had become reticent in my routine of preparing a schedule for this occasion. Epic Mom fail. Only in hindsight do I know this to be true. Everything was NOT ready.
Around 4:45 p.m. Julie showed up, we hugged and chatted for a few minutes, and then it was time for us to leave and for them to get on with their dinner and movie. We all went down to the basement and got the boys situated on the couch. Joe was on one end, Jake in the middle and Julie on the other end. TV trays were loaded and prepped with catsup, napkins and drinks. We said goodbye and headed up the stairs. Then, all of the sudden, and within 60 seconds of our lost presence, we heard Julie yell, “Jake, stop!” We could hear Jake saying, “Ouch!!!” and then Joe got into the action with a loud wail! Chris bolted toward the stairs and barely hit every other step on his way down. I yelled for Jake to stop from the top of the stairs. I heard Chris yelling at Jake to stop his apparent hitting of Julie and Joe. Then, grunting and yelling. I hurried down. Chris had Jake in a full on hold, paying special attention to his feet as they were attempting, and sometimes succeeding, to kick Joe in the head and face. Chris had Jake on his back in the middle of the couch in a tight hold, but needed help to continue the struggle. At 6’1” and 190 lbs., Jake required every ounce of energy to control. I got on the other side, removed Jake’s shoes and attempted to pull Jake up to a standing position. He was ordered to go to his room.
By now, Joe was wailing, biting his hand and looking for something to throw in his rage. He was pissed. I was in shock and Chris was stunned. Julie stood by not knowing what to do, but seeking a purpose. We just wanted everyone to be safe. Chris quickly got Jake to his room and shut the door leaving Jake inside by himself. He layed on his bed almost in a state of hyperventilation. He was safe, although visibly upset. I remained downstairs so that I could contend with Joe and get him settled down. He had a reputation of destroying things. Food was on the floor, along with catsup and water. The carpet was in distress. It didn’t seem to matter, but Joe was pointing it out which meant that he was stressed about how it got there. A moment later, Joe started wandering around the room, seeking something to fulfill his need to tear crap apart. I kept my distance and went to mop up what was on the carpet. Before I could even react, Joe sought me out, rushed toward me and bit me incredibly hard on the shoulder. I pushed him away while I fought back the tears, knowing that if I lashed back at him it would only add fuel to the fire.
After checking on Jake, Chris made his way back downstairs and coaxed Joe to sit with him. Everything was happening so fast. Chris hugged Joe firmly, giving special attention to the sternum area where the nerve center lies. I looked around for a possible glass of ice water so that I could try to get Joe to hold it and perhaps drink it. I remembered from a previous lecture that this can be a way to shift the brain into another mode. I found one and offered it. He took it in between his tears and runny nose. Chris continued to hug his firmly and talk to him about his feelings. The one thing we both knew is that Joe was mad and rightly so. We had betrayed his trust by allowing Jake to get to the point where he went into fight mode and took it out on his brother.
I made my way back upstairs to see about Jake. He was perseverating now on, “Saaaayyyy” (I’m sorry), saying it over and over. I told him that it was over now and we would talk about it later. It’s done. I had to try and calm him now, otherwise he would go through it over and over. I knew this from years of experience, although it had been a long time since we had seen this kind of aggression from Jake. We allowed Jake to do this without any regard for what Jake needed to feel safe.
It took 1.5 hours to get everyone calmed down and in a state of relax. Julie went home after hugs and words of comfort and reassurance. Now, Chris and I had time to sob and reflect. We held each other as we had done many years before, and we analyzed the horrific incident. I always have to analyze over and over until I feel as if I can live with whatever solution I come up with. I needed to hear Chris’ take on it too. It mattered what he thought. We had to be together on this. We both agreed that it crushed our image of contentment, and this was the hardest thing to come to terms with. Years of just going along so well, and then BAM! Wake up call. This was the ugly side of fragile X. This was the deep, dark reality that rarely occurred for us. It confirmed what we knew but couldn’t admit; they boys would always need some kind of support. It was engrained into their hard wiring and it was as necessary as breathing.
One could say this was a behavioral outburst. We knew better. The whole philosophy that people with fragile X syndrome do have biological situations that can cause such an outburst was so clear in retrospect. The outcome is usually evident when they shift into “flee, fight or flight”. The look on Jake’s face was clearly one of extreme fear that led to fight and an attempt to get away. His body was in full on defense mode when he didn’t have the evidence he needed to feel safe. The other thing that we knew is that anything even close to this kind of behavior hadn’t occurred in Jake in more than 10 years. If it were an ongoing situation, we might have thought differently. In addition, we had seen this in Joe before, and while they are in the middle of the fighting, they hear absolutely nothing. No matter what we offer, bribe, or threaten as a consequence, they are not capable of reason. Nothing is more important to them at this moment than survival. I had heard and seen this before. I knew the ugly look of it. As we sat in realization that we would not have an evening alone, Chris says to me that, “Jake got his way”. I disagreed. Jake is the one that lives to please us and would do anything to conform. This was not Jake we saw. Chris knew this, but it was hard to admit. It was the biological monster that lived within him, and only came out when it was absolutely necessary.
I had not provided a visual schedule to give him the 3 things I knew he needed to feel safe; 1. What are we doing 2. How long will it last and 3. What’s next? He was afraid we wouldn’t come back that night. He did his best to give us all the signs that he was uncertain, yet we chose to ignore them. We had spent years perfecting a visual schedule that I had failed to provide. He had no means of communicating. Now, we were faced with the worst possible outcome. We were suffering guilt like no parent should have to face. It was devastating to know that the whole thing was our fault. We knew better. We knew how to avoid this whole thing. We had done it for many years. Now, as fate would have it, we needed a wakeup call. The solution would take way longer now. We had completely breeched the trust of Jake and Joe. Joe did not feel safe either. He probably wondered if we could help him at that point, since we had not done it sooner. I wondered too. The only way to fix it would be to make a new and concerted effort to bring Julie back in small, well thought out, methodical intervals until the boys trusted us to tell them for how long. It would take some time. No, Jake did not get his way, and neither did we. As we lick our wounds and swallow our pride, we know that we can move forward. We have no choice. We had already seen the other side, and what a difference doing the hard work could do.
A month later, we made a plan. We decided that we should have Julie come over to our house in the afternoon once a week just to chat and be present. There would be no demand from the boys to speak to her or interact. We would chat with her because she is our friend and she was coming to visit us. We made the many visits positive and social. The idea was to alleviate any negative association between Julie and the boys. They are all important in our life, so the effort would be invaluable.
After several months had passed, the visits were going well and everyone was interacting positively. As often happens, life gets busy and the visits tapered off. More than a year later, the opportunity presented itself to have Julie come back once again in a care capacity, and we jumped at it. We had to try. Julie, Chris and I were all slightly nervous but we talked about it and agreed to practice breathing and relaxing prior to any interaction with Jake and Joe. They can smell nervous a mile away. This was my chance to renew and heal a relationship that I had neglected. I was at fault for the stress and consequence that we had suffered—all of us. I wanted it to heal and move forward.
We all agreed on the plan to be calm. Chris and I avoided talking about “who” was coming on this day, but focused all of our energy on the “what”. The guys and Julie would go to a favorite museum, then to lunch at a favorite spot, then to Walmart to spend their holiday gift cards—all high interest places. The “who” hardly seemed important. We made sure to give them each full details about what the day would be like down to the very last detail, but left out “who”. This is so contrary to everything I have done up until now, but we had to try something new for a whole new issue.
Julie came into the house calmly and quietly. We greeted like we always did. She sat down and we chatted for a few moments, almost ignoring the guys altogether. There was no upset, no anxiety. Chris and I proceeded with our plan to run some errands and leave the house first just like we usually did. Not a peep. Not a whimper. At that point, I was glad that I didn’t have any expectations because everything was going so well!
We returned home after several hours and shortly after the guys and Julie returned home too. Both Jake and Joe were completely happy with their “bags” full of goodies from Walmart. When I asked how their day was, they both replied, “Good!” Julie smiled and I could see the utter relief on her face. Many months of apprehension and sadness from the loss of her presence washed away. She and I hugged. We knew that old memory was healed and would no longer be a part of our future. We now knew how to overcome a new challenge that had come our way; but, we didn’t let it be something we couldn’t overcome. We just had to take a new path. We just had to take whatever time was necessary to make a new memory—a positive memory.
Now we know that each of us is capable of filling in an injured space with a positive one.